4.22.2009

I spoke with a different supervisor yesterday who was able to take care of cancelling our current OT services. Then, I had to speak to Tammy TWICE on the phone about cancelling OT -because the supervisor enforced her handling it. It went ok, but I just kept my mouth shut and said what I had to. Have I ever told you I hate confrontation? Well, I do.

So, Tammy's supervisor (name slipping mind) spent quite a while on the phone with me. She addressed my concerns over why Tammy was a bad fit. She addressed getting the new OT up and running ASAP. She addressed questions I felt were never answered (there were a lot). And she addressed what a Case Worker IS and isn't supposed to do for a family. The 'isn'ts' were pretty self explanatory and the 'is's' were mind boggling. Bottom line - Tammy really isn't doing her job. Everything was always vague with her. Tammy told me that she could not help me choose a therapist in any way. What the supervisor is telling me is that No, they can't recommend one over another (understandable) because they contract with them all.... but they can help in any way possible to find the right fit (based on credentials, specialties, degrees, etc..). All I EVER got was a list.

But LOW AND BEHOLD if I wasn't told an untruth by Tammy AND by fired OT Amy. There is NO rule in any book that a child is only allowed one evaluation per year. It is a decision that is completely child driven. That tells me #1. Tammy must have told Amy said untruth, in which Amy didn't protest or #2. Amy didn't ask for an evaluation in the first place, like we discussed.

The supervisor is going to keep our case for now until we get OT services going, so we won't be in limbo. Then she is going to assign us with the best fit for our needs - keeping in mind the list of people I have requested. Fair enough.

Supervisor has a list of 4 things to do for us:

--Find info on Dawn (new OT), set up OT sessions, and get us started with an evaluation.

--Research our case fully; find out what type of evaluation was done if any regarding OT

4.21.2009

If you were on my side of the screen - you might find me dancing on top of a chair waving my hands about...."God is good. All the time. He put a song of pra-a-aise In this heart of mine...."

......... or maybe I am really just sitting here typing..... but that's what I feel like doing.

Oh. My. Gosh. Someone made an 'anynomous' tip to one of our therapists that our case worker is, in fact, NOT doing her job at all. This is a factual tip - as in maybe this person actually has our files and knows first-hand. They are to remain unnamed - but I can tell you that it makes me feel more strongly than ever that we've got our train on the right tracks FINALLY. I was given several names of new case workers that are supposed to be 'awesome' to work with and will advocate FOR us instead of all this flailing about not knowing what direction we are to go next. Hey, now THAT'S a novel idea..... ADVOCATE. FOR. A. CHILD.

..... more dancing.........

......I'm feeing a little sensory overload........

.....doodopde deeee deee dooooo......

Ok. I'll chime in with more when

1. I'm settled down

and

2. I hear back about switching case workers and actually know something more.

4.20.2009

On the other side of that beautiful green meadow, you can just make out the sunrise through the thick fog that envelops anything it touches....

I feel like finally a little fog is lifting.

We had our Referral IEP meeting on Friday and hours later the whole family (excluding dad who was out-of-town) came down with the stomach bug. As bad as I wanted to process my thoughts - I was quarantined to whatever room made the kids most happy.

fRIDAY:

I could not have asked for a better meeting or case manager [Sally].

I walked into the meeting not knowing what to expect. I was as prepared as I knew how to be and I was resting on the knowledge that DS has a future and a purpose and no matter what little events happen now, it'll be ok. I prayed for several things prior to our meeting - one of which was for someone willing to listen and understand the unique issues my little boy brings - without the need for defense of diagnosis. To my astonishment, Sally greeted me and immediately told me how appreciative she was of the information I had prepared to describe in detail the strengths and weaknesses of DS. Her words were 'I have never had anyone paint such a perfect picture of High Functioning Autism until now.' She proceeded to take me step-by-step through what I had written to make sure she understood and allowed me to expand on certain thoughts that were intriguing or left her with questions.

She GOT him. I mean, as much as you can really get it in one and a half hours - she got it. I could go on and on, but the bottom line is that she understands that he has some really great strengths, but none of those take away from the fact that he needs a preschool environment to help him first and foremost with development of Pragmatic Skills across all areas (among other things, of course).

She read about the sensory needs that are being addressed by his DT and SLP and inquired why his OT was not a part of that if he is receiving OT services. I explained about him not getting an evaluation even though some paperwork somewhere says he did & she jumped right into helping me find what he needs NOW for OT. She was the last straw in Amy's back, and now Amy-current OT is a goner. I've already contacted two good leads on OT's with strong Sensory Integration backgrounds. One of the two has all kinds of specialized training, which impresses me and I can't wait to get more information.

We hashed through different preschool options that are not necessarily all options for DS, but were options to be discussed nonetheless. We have 2 inclusive (or what I'd call mainstream) classrooms for 3 year olds in our county.... There are also part day DD classes... and Full Day AU classes. The option that everyone was telling me he might qualify for was Itinerant services, which she quickly threw in the fire because of his great need for social interaction. She doesn't think one-on-one therapy is the right fit, but made a point to tell me that a TEAM would be evaluating his needs, and while she will be there for the whole process, the team will decide. I am a part of that team & I understood and agreed with her sentiments on Itinerant services. I actually thought they were something a bit different than they are.

tHIS mORNING:

I finally got to go through my speech concerns with Jen today. She tends to dismiss my concerns as 'typical development' - but I turned it around on her today. I had a list of what other 2.5 year olds and younger (that I know) are saying/inquiring/commenting/etc.. for each category that I had a question about. She left with a lot of great notes, some great new goals, and FINALLY seemed to understand what I mean when I say DS has a really rough time with Pragmatic speech.

tHIS aFTERNOON:

We had a well check for Baby Sis and I asked the Pedi about referrals for Private OT and for a Developmental Pediatrician for DS. He didn't bat an eye at the recommendation and immediately wrote that up for me. Good news = both qualify under insurance and it looks like I won't have to shed a dime. He recommended the Devel. Pedi I wanted to call - which made me doubly happy!

The OT's can work through EI until he is discharged in July and then continue on with him after in a private setting - which he may need since we are getting a late start on [what I hope to be] proper therapy. I am sincerely hoping that the 3rd time is a charm and we will get the right person this time.

All of this, plus I feel like our team of helpers is finally coming together. I feel like Jen, Suzanne, and Ron are all people who know and are understanding DS better and are becoming great advocates for him, too. It may seem a little late - but it's not. I have learned a lot about myself through his hard 'foggy' process. It really is ok that parts of it have been really hard. I am enjoying my child like never before, and I think we just needed to get through some hard stuff to get here. Maybe the road paved before someone behind us will not be quite as rocky or rough because we've been here first. Those who went before us certainly dug out the muddy road.....

wHAT a dAY. What a weekend. What a whirlwind. Praise God. Praise God. It looks like we are at least on the right path to get DS what he needs. It'll never be easy, but it's not looking impossible at all.

4.18.2009

This evening we needed some groceries. Dad is out of town & I had no choice but to take both kids, so I decided to make it fun. We went to Harris Teeter where they have the little carts for kids. DS has been doing so well walking along while we shop these days, I thought it would be a fun little change.
I will never forget hispriceless little face when he realized the cart was just for HIM to shop with. He was so proud, I think he almost tipped it over.
We set about finding an onion. He paced up and down every inch of produce reading the labels until he happened upon the last bin on the last aisle and found the onions. We got a couple and headed for aisle #1. That was easy enough - he always wants to find the aisle numbers anyway.
"Ok, now mommy needs a can of Peas. Can you find that for me?"
"Oh wait! Mandarin Oranges... do you want some of them?"
DS:"Peas, mommy, peas. No. Peas"
"But now I decided I need some oranges, can you find a can?"
DS:"Peas, mommy, peas. Aisle 1 Peas"
"Ok, Ok, I'll get the oranges, you get the peas. Aisle 2."
Well, round about aisle 2 he heard me say that something was on my list. Low and behold if there isn't a list right up there with the aisle number too (thinks DS). So, he proceeds to tell me I need 'Kool Aid', 'Juice', and 'Breakfast Cereal' - you know - because they're all on 'the list' [aka the sign].

Each time we got to a new 'list' he would stand in the middle of the aisle exclaiming all the items listed on the sign & refusing to move a muscle until I got all of them. It took some explaining and a little barganing and distraction, but I did manage to get away without any of those random items.
Until aisle 5.

This time, he was adamant. "Mixers. Mixers. Mixers Mommy" until the word 'mixers' turned into a whiny blurb that contained nothing but vowels.... but he persisted on.

I was on the verge of wetting my pants in laughter... my son was exclaiming and crying that he wanted mixers... and who knows what the poor shoppers thought of my alcoholic son....

I finally brushed off the laughter - helped him understand what was REALLY next on our list & went in search of Cheese Balls. Ahha!! "Cheese Balls are on aisle 10 with the chips, lets go find them"

Awwwww - man..... they don't sell cheese balls. They sell Cheese PUFFS. Well, that just won't do. LOL another breakdown of the system.... DS finally decides that Cheese Puffs are ok to go in the cart. And I asked him what was next: 'Cheese Balls'. Of course. Because my 2.5 year old can read and he knows that there is a distinct difference in the word 'Puffs' and 'Balls'.

Note to self: Make sure I know what I'm really going for next time & skip aisle 5!!! Also, wash pants.

4.17.2009

4.16.2009

I'm trying very hard to not be nervous about tomorrow. I am as prepared as I think I can be & I am holding fast to Jeremiah 29:11. I am coming to terms with the fact that public services aren't the end all be all anyway, so everything will be just fine whether someone there listens to me or not. But my #1 prayer for tomorrow is that I will say the right words, someone will listen and understand, and that my little soon to be three-year-old will get what he needs.

For I know the plans I have for you,"

declares the LORD,

"plans to prosper you and not to harm you,

plans to give you hope and a future.

This is the second of four meetings that will determine little man's IEP. The second one is set aside to discuss what needs to be evaluated and/or observed. This is equally as important for him as the IEP itself because if they wont agree to evaluate/observe what I think is necessary, then they won't get a full picture of his needs. The most frustrating part of this is that the forms I was supposed to fill out had a section to describe in 'narrative' his STRENGTHS, yet the section on concerns only had checkboxes.

I shake my head.

I think knowing and understanding his strengths are very important and I would have GLEAMED at the chance to gloat about my little boy had I not felt a bit of a set up in the way the form was written. As a rules follower, I had a bit of a hard time going against the grain.... but if I've learned ANYTHING over the past 10 months, it has been that I am the only voice that DS may have. So, I proceeded to narrate about EVERYTHING instead of what I was supposed to. I think I painted a pretty good picture, if I do say so myself.

4.01.2009

Going along with my recent 'hyperlexia' theme - I planned to get her on board to help me know what next steps would be necessary and what next steps would be useless. Maybe some suggestions on particular doctors, etc... Up until now, I haven't had an opportunity to mention my newfound information with any of them. I did email Ron, but he is in the field of Autism exclusively and our sessions with him have ended. I'm anticipating his response.

In she walks with Boggle Jr. and Hullabaloo DVD.

I know that a Title, a Diagnosis, a LABEL doesn't matter a hill of beans if someone just knows what to do. And she does. Maybe some of the hyperlexia material will help us understand something better - but for the most part she GETS him.

She was pretty unfamiliar with the term, other than the implication that a child would read early. But she was happy to read the short articles I sent home with her and said that she would read them and let me know her thoughts on next steps. She even said that she would be the one to contact the casemanager to request an addition to his current diagnosis.

It has been suggested on the Hyperlexia group I found that the next step needs to be medical documentation. That would facilitate me in not needing to argue what I *think* is true, but just being TRUE when we are in need of getting services. It also serves as a good starting point for casemanagers to understand WHO might be a good fit. Whether any of that ever happens or helps - I'm not sure - but that is what everyone says is the next step.

We've never been to a Developmental Pediatrician, but if I can get a good recommendation, then maybe I can also get a good recommendation for a full OT evaluation and we'll be on the road to having what I've wanted all along. I am slowly learning (slower than slow, I take a long time to process information.....) that EI is not the BE ALL END ALL of what we need. We are going to have to branch out on our own, and in doing so, probably bear the financial burden I hear tell of...

Anyway, so she brought those 2 games -

Boggle was a good easy way to get him to interact and answer questions while doing what he does best. (basically you spell 3-4 letter words with dice). I loved that he had to manipulate the dice to get the letters. He had to work harder than just writing it down or picking from a lineup. It was also a good game to get him to use both hands. She understands that USING his reading is a good thing. Jen always wants to find things that don't have words or reading or numbers - and I understand where she's coming from b/c there is a hard question to answer... "Is it better to use his love for words or better to steer clear of it?" A question I have asked myself multiple times. Myself - Dad - and Suzanne realize that he's going to do it anyway, so we might as well teach him appropriateness. Newfound info on hyperlexia supports that & takes it steps further - which will be a subject for another day.

I think Suzanne GETS IT well. She understands that he needs to learn to use his skills appropriately, and yet needs to be able to transition away from it when deemed inappropriate. But she never wants us to take it away from him - just make sure he's not absorbed into it & isolating himself.

Then Hullabaloo [oh my, what a great game].... what can I say? She knows he loves TV, so the DVD version allowed him to spend some time enjoying visual stimulation AND physical interaction. It had all kinds of simple instructions that challenged him to use auditory and visual discrimination. We all played, including baby sis!

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So, Why do I write this Blog anyway?

This blog is a journal of one little boy's journey on the Autism Spectrum. My hope is to journal my thoughts, my feelings, his successes in therapy, his hilarious 'sonisms', and anything else that makes him who he is. I want to be able to remember all those small successes and make a place for someone to come and read our story. Our story will inevitably change over time.

One thing that will never change is that God is in control and made him who he is. He also made me his Mommy and entrusts in me his care.